Jeff G:
I'm sorry for the loss of your friend Alan . You are one of the toughest people I know and I am amazed at how you handled everything you have been through . You were up and laughing with me just days after your surgery and your biggest concern was that you wanted me to let people know you were OK . Hugs, Jeff .
wolfter:
I am thinking about you and apologize for not responding sooner. How are things going of late? Are you close to being able to have a normal diet?
take care buddy
heartforyou:
Dearest Alan,
So sorry for your loss. We have lost so many things and friends in our lives...... And everytime we suffer another loss the pain returns.
I hope your heelth will improve with spring beiing here.
Sending you healing love,
Herman
AlanBama:
OCT 15, 2016
Hello friends,
First of all, let me apologize for being an 'absentee member' for quite awhile now. I certainly love and care about all of you as much as I ever have, it's just that my life has been re-arranged for me, thanks to Cancer.
Brief summary: I've been dealing with Stage 3 Cancer of the head and neck since this time last year, for carcinoma of the right base of my tongue. I had radical neck surgery, chemo, and 33 radiation treatments. I have been on a PEG feeding tube since Nov 7, 2014. I have worked very hard to recover, and get back to eating normally.
I received some tough news Tuesday; actually, I knew it before they told me, but to see it on paper, hear them say the words, and actually SEE the radiology report and film is a blow. It seems that despite my best efforts, I am going to be on a feeding tube from now on. Pretty much anything I eat or drink aspirates into my airway / lungs. The radiation destroyed my epiglottis, the flap that closes so food goes down the "right pipe". Being a LTSer of AIDS has not helped my recovery, as you can imagine; the G.I. doctor told me that "if it was a person who had a normal healthy immune system, and well-functioning lungs, we would probably tell them to go ahead and keep trying to eat what you can; but in your case, your immune system is compromised; half of your diaphragm doesn't work (due to severe shingles in 2007) so your breathing is not really normal. You've had numerous cases of pneumonia, and it's not worth risking getting aspirational pneumonia just by trying to eat".
I've shed my tears, and am trying to make my peace with it. Thank GOD I have an exceptional partner, Layne, who is a retired RN. He has taken excellent care of me, during this whole ordeal. I couldn't do it without him. So it's not just MY problem, it's his too. He has to eat every meal alone. He mixes up and prepares my infusion bag of hydration for every afternoon, and my bag of liquid nutrition (similar to ensure) for every night. I am tethered to an IV pole and a pump from about 3 to 6 pm each afternoon, and from 11 pm until 7 or 8 am. every night.
The implications of being an enteral feeding patient are many. There's the social aspect -- people don't know how to 'deal' with someone who doesn't eat or drink. As for any kind of sex life, again, thank God for an understanding partner. Imagine having a tube hanging out of your abdomen -- forever. It tends to change your perception of yourself. To say nothing of the physical and psychological effects. Certainly, not the least aspect, is financial. I'm a Medicare patient. I have no supplement; I do have a Part D plan, paid for by the State, and receive many medications from ADAP. I am in the Charity Care program at the Univ. of Alabama, where I receive all my treatment. That covers the Medicare co-pays and deductibles, thank GOD. But with the home health supplies, I'm on the hook for 20%. Also, all the various and sundry items that go with dealing with enteral care. Gloves, swabs, tape, etc. All non-covered expenses.
OK I've complained more than enough, so I'll stop for now, and again apologize for not being more active in the group. Since all this happened, I have joined a couple of head and neck cancer survivor's groups, and a group for Enteral feeding patients. I will try to be better, about checking in. Feel free to email me, anytime.
LOVE & HUGS TO ALL, Alan
heartforyou:
Sweet Alan,
I am speechless. What an ordeal you are going through. And above all you are extremely courageous. Alan, I am proud of you.
But I can feel your pain. It is hard to read these lines.
I am very very happy to read your partner is close to you. I admire him too.
Please know I am with you. I am crying here for I cannot do much from here. I am here whenever you need someone to talk to Alan.
But I am also very angry for what this disease has done to you, over and over again. I so wished I could help.